Saturday, May 10, 2014

Friday, April 25, 2014

There is an ornate and extensive cleaning list making the rounds on Pinterest boards and Facebook timelines everywhere. Repinned and posted by ambitiously optimistic moms who feel the daily burden of trying to keep their living space one notch below disgusting, the list involves things such as monthly oven cleanings (ha!) and -gasp- daily vacuuming.

I am simultaneously impressed and disturbed by the creator of the list, who, with five kids to my one, is, I concede, hygienically superior to me in every way.

The list was re-posted in a closed group of moms I belong to on Facebook, the poster asking the rest of us in all honesty, how close we come to the zealous perfection that is this cleaning list:

This was met with laughter, scoffing, an honest appraisal of what our cleaning efforts actually resemble, and mild, yet resigned disgust at the element of filth a realistic day in the life of a non-compulsive cleaner with kids entails.

And thus, out of that inspiration, I begat a new list, below. Before you call child services, I'll admit that my list is slightly exaggerated, but it's still closer to my reality than the original.

Saturday, March 22, 2014

A strange, free floating feeling hovered as we traveled from the hospital where we delivered Oscar to the one where he was being treated.

In a shoal of cars, we swum upstream like before. Only, we were no longer free floating. We were tethered now to the sick youngling we had created, being brought up to code in Boston.

During this time I experienced what I later dubbed biological confusion. And what, even later, I would call post partum depression.

While I wanted so much to bask affirmatively in the miracle of childbirth and the modern medicine that would repair my son's anomaly, what I began feeling instead was the unsettling, almost methodical process of emotionally shutting down and distancing from feelings of motherhood.

Certainly, this made me a horrible person. I knew how I was supposed to feel as new mother, birth defect, or no, but something very involuntary and mechanical in me was pushing away the plate of steaming parental hell it had just been served with a polite, "No thank you."

Not throwing the plate at the wall, mind you, but resisting certainly, saying "This isn't what I ordered."

PPD was not a far fetched concept for me. I have lengthy history with manageable, yet, influential depression. I was somewhat prepared to let the emotions of motherhood unfold for me in whatever stunted way they might need to. I knew before giving birth that the appropriate emotions would blossom in their own time if I gave them room to.

What I hadn't counted on were unforeseen medical issues that kept me from bonding with my child, in an act of self protection, out of fear that I might lose him.

As awful as it sounds, I now understand why mothers in the wild occasionally abandon their young. Of course, I would never abandon my child. Of course, even then, I loved him. But it was a love that only a couple of days in, felt like it would completely swallow up and undo me. Parental love isn't the type of thing one eases into. It's a sudden tidal wave of devotion, obsession, and fear.

If you are a thinking person at all, you realize that as much as you love your children, the day will come when you will part. Not to mention all the falls and scrapes along the way. It is the nature of an earthly life to suffer, and for parents, we take on our children's suffering on top of our own.

En route to Boston, I kept looking outside myself for signs from above as to how things would turn out.

Waiting for a light outside of a small Boston park called Oscar C. Tugo Circle was a good sign. Seeing repeated bus stop ads for a new show called Revenge was a bad sign. My superstitious strain of OCD wreaked havoc on my nerves.

We finally got parked in the massive garage shared by families of Boston Children's patients and Fenway Stadium goers alike.

The extent of my blood loss became apparent when I was barely able to support my own weight after making my way from the car to the NICU floor of the hospital.

A wheel chair was procured for me while we waited for Oscar to come out of surgery.

We met with his surgeon and his condition was more thoroughly explained to us.

The surgery had gone well.

In certain types of EATEF, the esophagus is insufficient to meet the stomach and tissue has be harvested from inside the body and stretched over a period of months. In such cases, babes are often sent home with G Tubes and other apparati used to assist in eating.

Luckily, Oscar did not fall into this category. He would be eating through a tube for the time being, but it was thought that the tube would be removed in a matter of days as he healed.

He was finally wheeled into the NICU, unconscious still, and swollen from fluids. Still, he looked better than I expected him to. We were glad to see him. We stood, hovering over and gazing into the bassinet until the head NICU nurse said, "Mom, Dad, Please, Touch!" We hadn't been sure we were allowed to.

We rested our hands on his face and whispered to him.

The doctors weren't able to give us a finite window of how long Oscar would be in the hospital. It was looking like weeks to months.

Until he was off the NICU floor and in his own room with a cot for one of us, it made the most sense for us to make a daily three hour drive to and from Wellfleet for the time being, to visit and deliver the milk I was avidly pumping every three hours in increasing quantities.

I struggled to balance wanting to care for my son with my own feelings of self pity. As a new mother, I had never so much wanted to be taken care of in all my life and the ironic selfishness of that wasn't lost on me.

Gratitude seemed like the only acceptable response to the fact that he was repaired and thriving, and I was grateful. But then, why did having my husband push me into a hospital cafeteria in a wheel chair feel like one of the lowest points of my life? Perhaps it was the overall helplessness of the whole situation coupled with hormones.

Scott was certainly the rock of the family at this point. He took care of everything. I looked to him as emotional guide of appropriate behavior.

It was he who would think to call the NICU and check in on Oscar, as we'd been encouraged to do. When my alarm would go off at two a.m. to pump, he would take the parts from me when I was done and wash them. He cooked for us. He did most of the driving to and from the hospital. I would have been lost without him.

After our first visit to the NICU, Scott and I finally returned to the Cape for the first time since leaving to have Oscar. Awaiting were three anxious cats who a neighbor had been feeding and a refrigerator stocked with partially spoiled food to be gone through from the thirty-six hour storm blackout.

For the first time in years, we cooked a meal that included bacon (the gateway meat), in the interest of my protein levels, which we ate in our king sized bed, feeling incomplete and hopeful. We had brought home Oscar's cream knit newborn hat. It was steeped in his own brand of perfect new baby smell that had accompanied him into the world. The two of us took turns smelling it and passing it back and forth as we watched something unmemorable on tv.

Friday, April 5, 2013

If you're following along from my previous birth story posts, you might have been waiting awhile for this one.

Like I said, I have not been looking forward to "going there". But it's easier for me now, seeing as how life has been acceptably stable for the past year or so.Resume scene of first time parents in hospital maternity room with new baby.

I was dealing with the typical brand-new-mom stuff including phonebook sized maxi pads and perinatal squirty bottles, not to mention recovering from my post birth D&C.

My first attempt at breastfeeding, Oscar had managed to latch correctly and seemed to be an avid fan of the boob. (This was after only one instance of me proclaiming to one of the maternity nurses, "Look. He's breastfeeding. It's slightly less painful than his delivery." To which she shook her head and released Oscar's latch, revealing a small purple hickey on my aureola.)

Oscar had a persistent strident sound he made while breathing and an occasional phlegmatic cough. It seemed strange for a newborn, but not necessarily alarming to me. Our first twenty-four hours with him were marked by concern and curiosity as to why this baby made these strange sounds.

I sent a mass email out to family and friends explaining that there seemed to be some issue and we were trying to get to the bottom of it, but that he seemed so healthy otherwise we were sure it must be minor.

Looking back now, I attribute my nonchalance to exhaustion and a new mother's denial. Could you blame me?

I had finally dug into the bag of snacks I'd been advised to bring to the hospital.

I was recovering from labor and surgery, hormones were surging, I was peeing and nursing out forty weeks of fluid retention, and this mama was hungry.

Scott had been accompanying Oscar and various nurses on a few minor tests they were administering to figure out his noises.

One of these women was a neonatal pediatrician brought in just for us.

I was stuffing my face with yogurt covered pretzels when she came into our room. There was a heaviness to her demeanor. She pulled up a chair to my bed and I knew enough to push the bag of pretzels aside and swallow what was in my mouth while I still could.

She looked me in the eyes and said, "Something is wrong with Oscar. He is making a lot of abnormal noise when he breathes. I've looked at his lungs and they seem normal. I tried to put a wire scope down his throat to examine his stomach and the scope would not go down all the way. I'm not sure at this point why that is. He needs to be looked at by neonatal specialists to run more tests than I'm able to do here. I've called an ambulance to come pick him up and bring him to the Neonatal Intensive Care Unit at the Children's Hospital in Boston."

Something in me wanted to argue with her, but she had not left me any room to.

I asked whether she thought I had done something wrong during my pregnancy. She said no.

I buried my face in my hands and cried. Scott put his arms around me.

When she left the room Scott started crying too. We wept like that, alone together. Confused, heartbroken, and frightened.

Soon after, it was explained that, while, if we insisted, Scott could accompany Oscar in the ambulance, there would be little room for the EMTs to do their job as it was and they preferred for the parents to drive in their own vehicle.

I was not able yet to leave the hospital due to my surgery, so if Scott followed, he would be going alone, and I would be left alone. We were told that there wouldn't be much he could do for Oscar during his first night in the NICU anyway. We were strongly encouraged to wait until I was discharged the next morning and go up together, when I would be more on the mend.

Oscar's ambulance arrived and it was decided he should be placed on an IV for the ride, due to concern over his breathing.

Scott and I stood on the side of a small room while three adults attempted with much difficulty to place an IV in our newborn.

He cried. He writhed. I felt sick and asked for a chair.

One of the nurses dipped her finger into a small plastic container and then into his mouth. He calmed a bit. I asked her what it was. It was a soother that hospitals use for newborns called Sweet-Ease. Basically, it's sugar gel, and it calms them down.

Though I was glad to see him calmer, I wondered what the ingredients were. This was the first of many times I was forced to relinquish control and watch strangers care for my child in ways that were unfamiliar to me.

The realization of my powerlessness began to sink in with the feeling that this was going to be a much different parenting experience than I had planned.

I asked to hold him one more time before they took him. I am remembering that for the first time as I write this. I don't remember what I did or said or what he looked like in that moment. I only remember the sensation of claws dragging through my heart as we were separated.

I walked back to our room and stood there crying into my hands. One of our nurses hugged me while Scott stood against the wall crying by himself. I apologized, saying that I just hadn't been prepared to watch him go. The nurse told me that no one could have been prepared for that.

Once Oscar was gone, all the attention we'd been putting on him was now put on his food, my (his) milk.

Thus began my lengthy affair with the breast pump.

Breast pumps are amazing inventions of modern technology. They're also totally gross and if you enjoy using one in any way, you might be a domesticated farm animal. They make an awful mechanical wheezing sound as they suck your once delicate nipples aggressively in and out of a transparent tube. Tiny streams of milk come sputting out in ten different directions, splattering along the inside of two funnels you hold against your breasts, joining into solitary rivulets which drip down into measured, BPA-free, sterile plastic bottles screwed onto the ends. After a pumping session the two bottles are married, labeled with the date and time, and refrigerated (or served). Any woman who has pumped knows the feeling of your worth being measured in milligrams of milk you've siphoned from your body. It is a weird and special distinction, something I would repeat if needed, yet would never like to revisit.

The maternity ward only had one breast pump and it was prehistoric, or as my husband recently said, steampunk. It reminded me of one of those metal switchboards the old fashioned operator gals used to sit at popping their gum. The switchboard was wheeled in and I was hooked up to it. As it started up, the violating pressure of the suction was just too much for me and I asked the nurse to turn it down. She said it was on the lowest setting. I felt that I just couldn't do anything else to my body that hurt and turned off the pump. I waited ten minutes and gave it another shot. I'm so glad I did. The same nurse got on the phone with my insurance company and demanded they send me a double electric breast pump. When they countered with a single manual pump she didn't back down, and she got her way. I'm so glad she did.

At this point in our ordeal I was definitely ready to throw in the breastmilk towel. Thank goodness for nurses who are lactation savvy and educated in the importance of colostrum in the healing process of newborns. Thank goodness for nurses who know how to pull all the stops and get a nursing mom off to the right start, because lord knows I needed some major stop-pulling at that point. My son would need all those white blood cells to heal up after his surgery. And I would need something, anything, to focus on and make me feel like a good mom, even if we were apart.

Scott spent an agonizing evening wavering between driving to Boston to be with Oscar, or staying in Wareham with me and leaving the next day. I didn't push him either way.

In the end, he decided to wait for me to be discharged.

That evening we ate a bit. We tried to watch tv. Every show seemed to be about babies or lost babies or sick babies. It was like a cruel joke. Scott asked me to turn off the tv.

I sent out another email to family and friends, explaining what we knew so far.

Late that night we got a call from Boston. After running tests on Oscar, they had been able to diagnose him.

Oscar had a birth defect called Esophageal Atresia/Tracheal Esophageal Fistula, or EATEF. I now can explain this birth defect to others. At the time, I did not have the capacity to have it even explained to me.

The easiest way to think of EATEF is that it is a defect of the food pipe and the air pipe. Basically, in the various forms of EATEF, these two pipes form incompletely, inappropriately, connecting where they're not supposed to and disconnecting where they're not supposed to.

In Oscar's case (Type C), his esophagus simply stopped growing before it reached his stomach, ending in a blind pouch. The food he ate literally had nowhere to go, and thus came back up. This is the atresia part.

Additionally, his airway, or trachea (which, luckily, did lead to his lungs), also connected to the part of the esophagus that was there, so that some of his food was slipping over to that side, causing his rattly breathing.

There are five variations of EATEF. Oscar had one of the easiest types to repair.

EATEF occurs in about one in four thousand pregnancies. It occurs in roughly the third week of pregnancy, before most women could possibly know that they're pregnant, while cells are still dividing. It is not caused by any activity during pregnancy. It is not yet linked to any activity or exposure before pregnancy. Parents who have a child with EATEF are no more likely to have subsequent EATEF children than any other parent.

EATEF is often accompanied by other birth defects, all of which can occur during the crucial formation of the third week of pregnancy. This group of defects is called VACTERL syndrome, and involve specific parts of the body between the esophagus to the anus. I think of them as defect chakras.

Luckily, Oscar only had the one defect. We know this because during his first year of life we had to rule out the remaining defects by repeated visits to Boston for medical tests. (More on that later.)

So there's your crash course on EATEF.

All this was much less than we understood that evening. All we knew was that Oscar's food and airway were somehow miswired, and Oscar was not getting any food in his stomach. This was tolerable in the womb, where babies get most of their nutrition through their umbilical cord and only "practice eat" by ingesting their amniotic fluid.

But now that he was on his own, Oscar would require prompt surgery in order to eat, and it was scheduled for the next morning.

Of course I had heard of birth defects before and I suppose that I knew that sometimes newborns required surgery, but I don't think I had ever actually thought about it. The thought of a newborn, specifically my newborn, undergoing general anesthesia and surgery, terrified me. How well do newborn babies handle surgery? The decrepit masochist in me was betting on him not coming out alive. That is what I was preparing myself for. The worst. I couldn't seem to latch on to anything else.

The next morning we prepared to leave for Boston. We ate horrible rubbery scrambled eggs and permissible blueberry pancakes. I took my first postpartum shower and washed my hair with a bar of soap. I threw the dirty laundry into my gym bag and wondered if the best way to sanitize a duffel bag was to burn it. Then I wondered how I would sanitize my laptop. But I digress.

On our way out of the hospital, empty car seat in hand, not one, but three hospital employees asked us jovially where our baby was. As disturbing as it was at the time, I accredit modern medicine with the fact that not one of these people considered the possibility that our baby had had complications (let alone the possibility that we had lost him).

It was so awkward that we were literally struck speechless the first two times. When the receptionist asked us where our baby was as we walked out the door, I found it in myself to reply,

Boston.

Her face fell.

He's in surgery in Boston.

Her sympathy was immediate and I vaguely reciprocated her Oh, Honey! as my new family of three, minus one, stumbled sadly out of one hospital and determinedly onto our mission to another.